To help us reach as many people in the TSC community as possible, the TSA will launch a free and confidential support line in 2020. 

From early next year, anyone wishing to access our support services will be able to do so through a free and confidential support line that will be open 9am – 5pm Monday – Friday.

Although this means transitioning away from our current regional adviser setup, the new support service allows the TSA to deliver sustainable, consistent and high-quality support to the ever-growing TSC community for many years to come.

The TSA wants to help everyone understand what to expect from our future support services. To be as open and transparent as possible, we have provided an overview below of what you can expect once the new support line is live.

How exactly are the support services at the TSA changing?

From early 2020, the TSA will offer a free and confidential support line. Everyone in the community will be able to contact a fully-trained support adviser by telephone, email, online chat or post between 9am – 5pm, Monday – Friday, every week. Information and resources on our website will also be improved, to make it easier for you to get support.

Introducing the support line means moving away from our current regional adviser setup, replacing it with a service where trained support line advisers are available to every community member through a central service.

Will the support line advisers be aware of my personal situation, or will I need to update them every time I contact them?

You won’t need to ‘start fresh’ every time you contact the support line advisers. With your permission, a personal and confidential record of your situation and any issues that you have contacted us about will be logged, which will be accessible by the support line adviser team only. This means that when you contact us, the support line adviser you speak to will already have some insight into your situation.

What you talk about with our support line advisers will be confidential*. You will be able to talk about any TSC-related issues that you have with our support line advisers in a safe environment, such as questions about a recent diagnosis, outreach for emotional support or help with filling out a benefits form.

Contact can also be anonymous, if you prefer.

*Unless we are concerned about you and think you may be at risk of harm. If this is the case, we may have to tell a third party. However, we would always talk to you before we did this.

Why is this happening?

Our current five-year strategy for 2019 – 2023 is to REACH more people and drive more REseArCH. There are between 15,000 – 44,000 people in the UK affected by TSC. Yet, at the moment, we reach only around 1,600 of these people. By moving to the new support line, we intend to reach more of the people that we currently have no contact with, while also offering broader contact hours for our present membership.

Our regional adviser setup and the fantastic adviser team have been important to the TSA, particularly when our community grew to such a size that it was no longer possible for all members to be in direct contact with each other. However, the TSA now faces another milestone in how we meaningfully engage with and support our community, with more people now expecting to access information and support digitally or remotely, rather than face-to-face.

Another aspect of our current five-year strategy is to grow our services whilst responsibly managing our ongoing costs, to ensure long-term sustainability. The new central support service allows us to do this.

What are the advantages of the new central support service for those who will access the service?

Changing to a free and confidential support line will mean:

  • Making it easier for people to get support and information. Trained support line advisers will be available from 9am – 5pm, Monday – Friday, every week, with an improved website also making it easier to access information
  • Having a free phone number. Our community will be able to reach our support line advisers through a free telephone number, as well as on email, online chat and post
  • Having a support service that is more balanced. Everyone who gets in contact with us will get the same level of service and support, regardless of their location in the UK or their proximity to a TSC clinic. Newly diagnosed individuals/families and those already in touch with us will also get a more equal level of support
  • The possibility of case management support. Vulnerable individuals and families who need help with complex issues will have the availability of case management

What will be the biggest change to your support services from 2020?

For many in our community, accessing the new service will be very similar to what we currently offer, only with a better overall service that is more consistent and fairer.

The most significant change compared to our current service will be that face-to-face support, made possible through the regional adviser setup, will draw to a close.

We understand that the changes to our support service will not be welcomed by all members of our community, in particular those who currently see their regional adviser face-to-face. That is why we are working hard so that the transition to the new service is as smooth as possible for all, whilst also ensuring that the benefits of the new service are highlighted.

Is the new support line being introduced only so that the TSA can save money?

Introducing the support line is much more than a financial decision. Although moving to the support line will help the charity to reduce costs, what is driving the change is a need to deliver a robust and easy-access support service for the TSC community that is available for many years to come.

What will happen to the current setup of the Support and Information team?

Introducing the support line involves restructuring the current setup of our Support and Information team.

This restructuring is being done professionally and appropriately. The TSA is very grateful for the service of all of its Support and Information team and will support each individual during this transition, whether they continue to be employed by the TSA or not.

What steps did you take in preparing for moving to the support line?

In making the decision to move to a support line, we consulted with professional bodies and charity organisations who successfully run support lines services that are similar to the one that we will launch. This gave us encouragement and confirmed that this move is the right decision for the TSA.

Every member of the TSA Board who looked at the support line proposals and scrutinised them in detail was convinced that this was the right path to take.

How are you working with the TSC community on the changes to your support services?

The help of the TSC community in implementing the new support line is vital. Towards the end of 2019, we will be running a pilot of the new service. This will help to ensure that when the support line service launches in 2020 it is robust and able to serve the TSC community as effectively as possible. The more information and feedback we have from the pilot, the better the support line service will ultimately be.

If you have thoughts on the support line that you would like to share, or if you are interested in being a part of the support line pilot, please contact Rachael Wyarrt (Head of Support and Information Services) via rachael.wyartt@tuberous-sclerosis.org or 0300 222 5737.